From the AlzAuthors Blog: Occupational Therapist Barbara Smith Teaches Alzheimer’s Caregivers New Skills in “Still Giving Kisses”

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By Barbara Smith

I am an occupational therapist, specializing in developmental disabilities. I had never planned to work in the area of geriatrics. But when my mother developed Alzheimer’s disease, I was thrust into the world of home care, Medicare, assisted living and nursing homes. I read numerous books and learned the lingo of lawyers, the health care bureaucracy and gerontology.

Fortunately, as an occupational therapist, I have years of experience adapting environments and creating activities to promote functional skills and quality of life. I wrote this book to share how I helped my mother enjoy her life as best as possible, as she regressed through the stages. I could not help but notice that the residents in my mom’s assisted living and then her nursing home had few visitors.

I believe that there are many reasons for this, but common ones are:

  • Friends and loved ones are scared and confused about the person’s decline
  • Friends and family do not know how to relate to a person who may no longer speak or seem to recognize them.
  • And most sadly, friends and family think that the person has so little awareness that their presence is of no value.

still giving kisses copyMy primary goal in writing Still Giving Kisses: Helping and Enjoying the Alzheimer’s Victim You Love was to offer an alternative to the above situations. Like many others, I was in the “sandwich generation.” My son was a tween and teen during these years and had many developmental and social challenges related to autism. The time crunch from work and family obligations naturally made spending time with my mom difficult–as I’m sure is true for millions of other caregivers. However, when loved ones learn how to help and actually enjoy being with this person, the relationship takes on a beautiful and mutually beneficial meaning. Given the right information and support, family and friends can learn how to spend quality time with a loved one that will create positive memories.

The title of this book reflects one of the few remaining motor acts my mother was able to perform during the last few months of her life. When she was no longer speaking, non-ambulatory and unable to eat independently, she was still able to pucker up her lips to communicate “I love you, come over for my kiss.” This was a highly significant motor act, one that symbolizes a continuing connectedness between myself and the Alzheimer’s victim I loved.

There are many books on the market that describe the symptoms and stages of Alzheimer’s disease and behavioral interventions that promote function. Often this information is dry and overwhelming. There are also many highly readable memoirs that give the spouse, adult-children or the victim’s point of view. In writing, Still Giving Kisses, I strove to provide both.

You will read a compelling memoir of a woman whose earlier mental health problems compounded the many challenges of memory impairment. The many therapeutic techniques, adaptations and teaching tools I share are all tricks of the occupational therapy trade, along with my own unique touch. Extensive resources and medical, legal and care-giving information provide survival tools.

Although I wrote this book primarily for friends and family of Alzheimer’s victims, Still Giving Kisses provides a framework for health care professionals entering the field of geriatrics. Indeed, I wish this resource had been available when my mother began showing the earliest symptoms. I hope that my book helps you to enjoy a journey that nobody chooses to take . . .

Purchase Still Giving Kisses

About the Author

Barbara Smith is an occupational therapist specializing in developmental disabilities. She discovered a penchant for creating highly effective therapeutic activities out of household materials such as detergent bottles, cardboard boxes and newspapers. Her book The Recycling Occupational Therapist describes how to fabricate and use these activities.

Barbara’s second book From Rattles to Writing: A Parent’s Guide to Hand Skills (published by Therapro, Inc. 2011) is written for parents with typically developing children from ages birth through five years to help develop the skills needed to read and write. In addition, the activity adaptations make learning easier for children with sensory, motor or sensory challenges.

From Flapping to Function: A Parent’s Guide to Autism and Hand Skills is written for parents of children who have or they suspect may have an autism spectrum disorder. Readers will learn how autism impacts the development of hand skills and to use the teaching strategies and adaptations that help children reach their potentials to perform everyday functional activities and academic skills in school.

Connect with Barbara Smith: books, courses, educational videos and social media

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For more extraordinary books about Alzheimer’s and dementia
please visit the AlzAuthors Bookstore.
Reposted with permission of AlzAuthors, the global community of authors
and readers whose lives have been touched by Alzheimer’s and dementia.
I am a co-founder and admin.

From the AlzAuthors Blog: Carol B. Amos Shares “H.O.P.E. for the Alzheimer’s Journey”

Amos, Carol graphic copy

By Carol B. Amos

My two brothers and I were devastated when our mother began displaying signs of Alzheimer’s disease in 2002. She lived alone in her home and her nearest adult child lived four hours away. We banded together to face this challenge head-on. We began a period of observing, investigating, collaborating, and careful listening to gain insight into the situation. We visited and called our mother more often. We each solicited advice from caregivers we knew and visited our local Alzheimer’s Association office.

My brothers and I worked hard to help our mother maintain her independence and remain in her home. We worked with her doctors, and after multiple attempts Aricept was prescribed. We hired a social worker and nurse to assist her. When “issues” arose, we never knew if an event occurred as she explained. This was extremely frustrating to us. Eventually a dangerous incident demonstrated that she could no longer live alone. It was difficult taking responsibility for our strong, independent mother.

I learned about Alzheimer’s disease through reading, attending workshops, observing caregivers, and from on-the-job training. I have learned from my successes and my failures during this eleven-year period. I have shared my learning, experience, and encouragement with friends, family, and colleagues as they embarked on their journey. I found that a little information made a big difference in their caregiving, so I wrote the book “H.O.P.E. for the Alzheimer’s Journey.” Help, organization, preparation, and education can make the Alzheimer’s journey less stressful and more rewarding.

Final Approved Cover copy“H.O.P.E. for the Alzheimer’s Journey” equips caregivers for their journey. The book is a combination of structured information, insights, and personal narratives to demonstrate the concepts. The concepts are conveyed in an open, honest, and creative manner using original family email communications. These emails provide insight into our thoughts, concerns, emotions, and deliberations as we realized our mother’s memory loss, sought a diagnosis and treatment, selected housing options, and developed care strategies as our mother continued to deteriorate. The book introduces The Caregiving Principle™, a simple and novel approach that provides a deeper understanding of the person with Alzheimer’s and a framework for the caregiver’s role. The Caregiving Principle™ states that the amount and type of caregiving required is directly related to the needs and capability of the person requiring care. In other words:

“Needs of the Person” – “Needs Filled by the Person” = “Needs to be Filled by the Caregiver(s)

Simply put, if a person has needs and cannot provide for all of their own needs then someone else must provide those needs. The “someone else” is a caregiver. The principle utilizes a holistic approach by using Abraham Maslow’s Hierarchy of Needs to define a person’s needs. Maslow’s Hierarchy of Needs increased my understanding of my mother.

“H.O.P.E. for the Alzheimer’s Journey” has been a blessing to many caregivers since the pre-release in May 2018. My ultimate goal is for the book to become obsolete. I am actively involved with fundraising and advocacy efforts to increase research so that a cure is found for Alzheimer’s disease.

Purchase H.O.P.E for the Alzheimer’s Journey

About the Author

Carol B. Amos started her Alzheimer’s journey when her mother started having memory problems. Carol has immersed herself in Alzheimer’s education by reading and attending conferences, workshops, and support groups. Carol is a CARES Dementia Specialist and is Alzheimer’s Association essentiALZ Plus certified. She was the winner of the 2012 “Your Favorite Memory” essay contest sponsored by the Delaware Valley Alzheimer’s Association. She has a passion to share her knowledge and make the journey for Alzheimer’s caregivers less stressful and more rewarding. She is also working to help eliminate Alzheimer’s disease as an Alzheimer’s Association volunteer, fundraiser, and advocate.

Carol has a B.S. and M.Eng. in chemical engineering from Cornell University. She retired from a thirty-five-year career at The DuPont Company. She is active in her church (youth ministry, women’s ministry, usher board, and construction committee). She has been married to her husband, Alvin, for nineteen years. She enjoys tennis, travel, and gardening at her home in Delaware.

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

From the AlzAuthors Blog: Ellen Smith Discusses Her Alzheimer’s Novel “Reluctant Cassandra”

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By Ellen Smith

Reluctant Cassandra came to me first as a title. I’ve always been fascinated by Greek mythology and especially with the character of Cassandra. She was given the gift of prophecy along with the curse that her warnings would never be believed. In Greek mythology, Cassandra’s story ends with the fall of Troy—a tragedy she foresaw but was unable to prevent.

What would it be like to see the future and still be helpless to change the outcome? Unfortunately, I’ve lived that experience. Many of us have. When I wrote my own version of a modern-day Cassandra story, I imagined a woman whose father had been diagnosed with Alzheimer’s. She could see clearly that his health was deteriorating, but it was still so hard for her and her family to accept the future that was unfolding.

Reluctant Cassandra LargeThe journey that my characters took through anticipatory grief was very similar to what I had just been through in my personal life. I actually wrote Reluctant Cassandra the year after I lost my son. Living through his diagnosis and passing was a heartbreak I hadn’t been able to put into words, but when I stepped into this fictional world, the pain of my own Cassandra experience poured out.

While writing Reluctant Cassandra was cathartic, the story continued to take on a life of its own after publication. Only a week after my release date, I received my first letter from a reader. She had connected strongly with the story because it mirrored her own experience after her father was diagnosed with Alzheimer’s. I was so touched that she reached out to share that with me—in fact, I still have her email printed out and pinned over my desk! Her letter was later joined by more notes from other members of the Alzheimer’s community. Here I had written this story at a time when I felt so alone and now it was connecting with readers from all over.

In the three years since Reluctant Cassandra was published, I’ve continued to write and advocate for those with Alzheimer’s. I released a short story collection loosely based on the setting of Reluctant Cassandra on Channillo for Charity, with all proceeds going to benefit the Alzheimer’s Association. Even though I didn’t know anyone with Alzheimer’s when I was first writing Reluctant Cassandra, this disease now has many faces for me. I see those who have been diagnosed with Alzheimer’s themselves, as well as their families, friends, and caregivers. I’m grateful to them for telling me their stories, and honored that they are willing to hear mine, too.

This is the true gift of a story: it reaches across the barriers of time and place and circumstance and allows us to connect with each other. The Greek myth of Cassandra was first told hundreds of years ago, and yet the story still impacted me as a 21st century reader. My novel was inspired by a grief I couldn’t put in to words, but writing this story allowed me to become a part of the Alzheimer’s community. I could never have imagined where the book would lead me when I first thought of the title years ago. I am beyond grateful that it brought me here.

author headshotAbout the Author

Ellen Smith is the author of Reluctant Cassandra, Every Last Minute, and the Channillo for Charity series Ghosts of Eagle Valley, which benefits the Alzheimer’s Association. When she isn’t busy writing, Ellen can usually be found reading, crafting, or playing piano. No matter what she is doing, Ellen is always wondering, “What if?” Ellen lives with her family near Washington, DC.

 

 

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For more extraordinary books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

From the AlzAuthors Blog: Jessica Bryan Returns with “The Mighty Ant – An Anthology of Short Stories for Seniors”

_just like the little ant, whose size is disproportionate to its strength, so can stories have strong impact, regardless of their length._
By Jessica Bryan

I am an author of over 28 books who has always shared my stories with my mother. Sadly, Mom suffers from Alzheimer’s, and as the disease has progressed she no longer comprehends more intricate plots, nor can she focus on longer, more detailed stories.  As a consequence, I began reading short stories to her. I noticed that after reading something more easily comprehended, there was often something in the tale that sparked a memory and conversation.  “Do you remember gardening?” I asked her after reading about a gardener. It brought a sweet reminiscent moment that included smiles and even laughter. That spawned my idea for a book of short stories specifically dedicated to the elderly with cognitive issues and their caregivers who often search for activities that will provide quality time with their loved ones.

the mighty ant

Recently, I was involved in a project for the county to discuss the needs of aging communities. It was abundantly clear that caregiving services were needed without enough funding to provide these services. I thought that I could combine the idea of a book of short stories for seniors with a fundraiser for the Council on Aging.

I put out a call for submissions from authors who might be interested in participating, asking for a donation of short stories with a focus on brevity and simplicity.  The profits from the book sales would be given to North Carolina’s Chatham County Council on Aging.  The authors were more than happy to generously share their work with no thoughts of remuneration.  The results were submissions from all over the world. They were charming, memory and conversation-provoking stories from 33 authors.

Editing was difficult because of the 55 stories that were accepted there were so many others that were submitted. Late nights and reading aloud to my wonderful husband helped narrow down the choices. Not all the writers were authors. Many were people who simply wanted to participate and believed in the cause. Many had been or currently were caregivers themselves and could relate to the needs of caregivers and their loved ones for whom they were caring.

The title of the book came to me one day as I observed a little black ant carrying something large to its nest. I thought about the strength of an ant. Titling the anthology The Mighty Ant I explained on the cover, “Just like the little ant, whose size is disproportionate to its strength, so can stories have strong impact, regardless of their length.”

In addition to my own stories I wrote for the anthology, I’ve also written many other books ranging from fiction, Young Adult fiction, children’s books, to non-fiction (humor, self-help, and inspirational) books. My four-book series on caregiving has been described as books that should be required reading for those involved in caregiving because they are helpful, informative, raw, humorous, truthful, and real accounts of what a caregiver actually experiences.

Several AlzAuthors are featured in this anthology: Angela G. Gentile, Irene Olson, Marianne Sciucco, and Vicki Tapia.

Purchase The Mighty Ant

jessica bryanAbout the Author

Jessica Bryan lives in North Carolina where she is a real estate broker and an active advocate for caregivers and care receivers. Jessica has written all her life, but during the past few years she began writing full-length books, including fiction and non-fiction, books for young adults, and some wonderful Juvenile action-adventure books.  Her interest in writing about caregiving began when her mother came to live with her and her wonderful husband, Skip. Jessica loves to laugh and claims that her sense of humor shines though all of her books regardless of the subject matter.

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 For more extraordinary books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore.

Reposted with permission of AlzAuthors, the global community of authors
and readers whose lives have been touched by Alzheimer’s and dementia.
I am a co-founder and admin.

From the AlzAuthors Blog: Florrie Munat Shares her Lewy Body Caregiving Story in “Be Brave”

Florrie Canva

Love Remains

By Florrie Munat

“Are you going to write about this?” Chuck asked.

I stopped sorting the pile of laundry that a nursing home aide had just left on his bed and turned to look at my husband. Had we not been married for thirty-six years, I might not have known what he was talking about. But in addition to our long marriage, for the last two years I’d been supplying him with words he could no longer remember. So it took me only a few moments to figure out exactly what he meant.

He was referring to the soul-shattering changes that followed his stroke and Lewy body dementia diagnosis. Those changes had ended the chapter of our marriage when we lived together in equal partnership under one roof, and had begun the current chapter in which Chuck was a nursing home resident and I was his daily visitor. He was asking if I was going to write about those changes.

Back when I worked as a librarian and writer, and Chuck taught high school English and then edited a national classroom newspaper, our married life included some major changes (a cross-country move from Connecticut to Washington) as well as some tragedies (the death of his ex-wife, which led to my adopting his three young children).

But those changes seemed simple compared to this one because I felt alone now. I had become the sole repository of many of our once-shared memories, which left me with a profound sense of loss.

By asking this question, Chuck was giving me permission to document and reflect not only on the cataclysmic events of the past two years, but also on however many years lay ahead of us. His question: “Are you going to write about this?” was also a request. If he’d been able to frame it differently, Chuck might have said, “It’s up to you to tell our story now because you’re the only one who can. And others may be helped by knowing what happened to us.”

Four more years passed before we had to say our final goodbyes, and during that time he continued to remind me, “Are you going to write about this?”

be brave cover imageHis question planted the seed that grew into my memoir, Be Brave: A Wife’s Journey Through Caregiving. He even gave me the title on the day he decided to stop eating and drinking and told me to “be brave.”

With the exception of one chapter about our family’s celebration of the Irish New Year shortly after Chuck’s dementia diagnosis, I wrote the first draft of Be Brave after Chuck died in 2009. Then, with the assistance of an insightful developmental editor and a talented book designer, I spent three years rewriting that draft—and in December 2017, Be Brave was finally published. Kirkus Reviews chose it as one of its Top Indie Books of 2017, calling it “a beautiful, richly panoramic book that should reassure caregivers and delight memoir readers.”

While I worked on Be Brave, I was processing my grief by writing and rewriting our story until I found some meaning in those six nursing home years by placing them in the context of our forty-year marriage. This is not to say I discovered a reason why our lives played out the way they did. That remains an unknowable mystery. And if I could have an intact, healthy Chuck back right now, I’d do it in a heartbeat.

But by writing our story, I did find some consolation embedded in our suffering. And that is that no matter how difficult life became during the caregiving years, our love for one another was never in doubt or in danger. In fact, had we not lived through those last six years, we would not have known the depth and magnitude of our love.

Like all good teachers, Chuck asked questions; he didn’t provide the answers. He wanted me to figure out why “writing about this” would be a good idea. I think he knew his question would lead me to the understanding that even after much is taken, much abides. Now his illness is gone. But our love remains.

florrie munatAbout the Author

Florrie Munat is the author of Be Brave: A Wife’s Journey Through Caregiving (2017), a memoir focusing on the years she was a caregiver for her husband Chuck who suffered from Lewy body dementia. Florrie has published several children’s books, articles, stories, and over 150 young adult book reviews. She’s worked as a reference librarian, English teacher, and university press worker. She lives near Seattle, Washington, where she records audiobooks for the Washington Talking Book & Braille Library, and is writing a YA novel and a memoir about grieving. Learn more about Florrie and Be Brave at www.florriemunat.com.

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For more extraordinary books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. 
Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

From the AlzAuthors Blog: Meet Gincy Heins, Editor of “Before the Diagnosis – Stories of Life and Love Before Dementia”

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By Gincy Heins

As I was texting a friend who would be meeting my family for the first time, I realized she would never know so many aspects of my husband, and I started to cry.

She would never know the person who talked easily and could captivate people with his stories about working at Disneyland. She would never know this man who could repair anything that needed fixing in our house and was called by other people to answer their home repair questions. Instead, she would see my husband as a rather quiet person who didn’t have a lot of confidence in his abilities and often couldn’t make a decision about the simplest things.

Wiping my tears, I thought of the many incredible people I now know who had Alzheimer’s or another type of dementia. I got a glimpse of who they were through stories their spouses told, and I wanted other people to see how amazing all these people were. Whether they were amazing because they were highly respected in their career or they lovingly raised their family, I felt their stories should be told.

I emailed everyone I knew whose loved one had any type of dementia and told them I had an idea for a book sharing stories about who our loved ones were before they had a dementia diagnosis. I reached out through social media and I asked Alzheimer’s Orange County to help me spread the word. When being filmed for a MyAlzhemer’s video I invited the producer to share a story. I reached out to as many people as I could.

I had no idea if anyone would respond positively, or at all. I hoped for ten stories and was thrilled when I received 36 contributions! This was so much more than I dreamed of receiving!

gincy coverI enlisted two friends to help with the editing. Together we read through each contribution many times and edited for clarity, all the while trying to keep each person’s story in their voice. All authors approved the final version of their story.

Finding the perfect publishing option was a challenge, but I knew we would find the best way to publish this important work. Most publishers never responded. One was very interested in the concept, but didn’t want to deal with a book involving 36 authors. Self-publishing had too many considerations. A friend came to the rescue and handled that for me. Whew!

On March 12, 2018, Before the Diagnosis: Stories of Life and Love Before Dementia was published on lulu.com (and is now available there as well as from Amazon and Barnes & Noble). This anthology of 36 stories has been well-received and shows that people are not forgotten or unimportant because of their diagnosis.

As of the end of December, over 230 copies of the book in print and digital formats have been sold. Each of the 36 authors who participated in this book were given the option of donating their share of the earnings or retaining them. I am thrilled that over 90% of the revenue is being donated to one of four nonprofit organizations: Alzheimer’s Orange County, Alzheimer’s Association, Lewy Body Dementia Association and Alzheimer’s Research and Prevention Foundation.

Purchasing this book gives back to organizations that help us on this journey, benefitting all of us.

About the Author

Gincy Heins

Gincy Heins is the creator and editor of Before the Diagnosis: Stories of Life and Love Before Dementia and one of the co-authors of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers series of books.

She teaches classes for older adults, is a Senior Commissioner for Cypress, CA, speaks at conferences and on panel discussions, and volunteers at the public library and with Alzheimer’s Orange County. She and her husband are the proud parents of one grown son.

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From the AlzAuthors Blog: Meet Richard Creighton, Blogging at “Living with Alzheimer’s”

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By Richard Creighton

Why would a 78-year-old grandfather who doesn’t like to write become a blogger? The answer lies in my personal experience before my wife Kate was diagnosed with Alzheimer’s in 2011.

We played a major role in caring for our parents. There was a lot to learn. I felt we knew far too little about our parents’ experiences before our involvement in their lives. Kate and I were happy to have cared for them, but we wanted to make life easier for our own children. That meant keeping them knowledgeable about our lives. That, in turn, led me to start a journal the day of Kate’s diagnosis. This was a way to document our experiences for future reference.

After a year or two, I began to think that my journal might be of interest to others, especially those who are living with Alzheimer’s themselves. It was too much for a book, and I was continuing to make regular entries. A blog seemed like the way to go.

There are three things about our story that make it a little different from others. First, it is both an account of our post-diagnosis experiences, as well as a “real-time” account of what is happening every day. Second, ours is a story of optimism and joy. No couple escapes the challenges of dementia and the sadness that comes with it, but we have been able to live happily throughout our journey. Third, it is not a place to look for advice. I believe there are many other sources for that. This is simply our story. It tells what it’s been like for us to live with Alzheimer’s.

We’ve maintained an active lifestyle throughout our journey. Most of that has involved our everyday activities here in Knoxville. We attend most of the theatrical productions at three of our local theaters. In addition, we attend a variety of musical events that include opera, jazz, and Broadway. We have traveled a good bit over the course of our marriage. Since Kate’s diagnosis, we’ve enjoyed an African safari and trips to Machu Picchu, the Galapagos, and New Zealand. Our last and final international trip was to Switzerland in 2015, where we both paraglided off the mountain top overlooking Interlaken.

About a year after her diagnosis, we started eating out for all our meals except breakfast. For us, that has proven to be one of the best decisions I’ve made. The meals themselves have been secondary. The important thing is that it has helped to minimize stress and social isolation. It wouldn’t be for everyone, but it works for us.

We’ve been very fortunate. We continue to enjoy life and each other even though Kate’s memory is virtually gone. It is only now that we are reaching the hardest part of our journey. Our experiences may not be representative of others, but I am sure that almost any primary care partner will recognize the issues we have faced. If you get a chance, drop by sometime: Living with Alzheimer’s Blog.

photo 2 richard creighton jpgAbout the Author

Richard Creighton is a former college professor and business owner. He and his wife, Kate, met in college and have been married 55 years. They have a daughter and a son and five grandchildren.

Caregiving has been a central part of their lives since the Fall of 1989 when Kate’s father had a stroke. Three of their parents were cared for and died at home, his father in the hospital. Kate’s mother lived in their home for almost 5 ½ years with 24/7 care provided through an agency. Through those experiences Richard learned much about the health issues, living arrangements, and personal care for people with dementia.

Kate was diagnosed with Alzheimer’s two years before his dad died. He says that his experiences with their parents has helped him to be a better primary care partner for Kate. He is guided by his belief that there is no greater privilege than to walk with someone you love through the last chapters of her life.

Connect with Richard Creighton

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Twitter: @LivingWthAlz

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For more extraordinary books about Alzheimer’s and dementia
please visit the AlzAuthors Bookstore.
Reposted with permission of AlzAuthors, the global community of authors
and readers whose lives have been touched by Alzheimer’s and dementia.
I am a co-founder and admin.